Section: Dominican Republic
Published: June 2006
Dominican PLWA call for Massive Scaling Up of Treatment Access and End to Illegal but Widespread Discrimination
By Richard Stern, Eugene Schiff, and Laura Porras*
In a two day conference organized by the Agua Buena Human Rights Association in Santo Domingo on May 8th and 9th, several dozen people living with AIDS in the Dominican Republic denounced violations of Human Rights and lack of treatment access.
The conference’s primary goal was to create a "horizontal" space and serve as a model in which PLWA are given equal time as "decision makers" to speak, and more than half of each "session" is devoted to questions and debate with the audience.
More than 60 PLWA from around the country participated in the meeting, along with "decision makers" in the Dominican Republic from PAHO, COPRESIDA (The President's Commission on AIDS), USAID, the National AIDS Program, the National Tuberculosis Program, and the Health Ministry several of the countries leading HIV/AIDS physicians, virologists, researchers.
Civil Society presenters included representatives from the Dominican Network of People Living with HIV/AIDS, the CCM, AID for AIDS, Amigos Siempre Amigos (which provides support for the G/L/B/T population), the National Coalition of NGO's working in AIDS, Hogares Crea (which operates a home for substance abusers who have AIDS), Agua Buena, MODEMU (an organization of Dominican Sex Workers), and MOSCHTA (which supports Haitian minorities living in rural areas in the Dominican Republic).
At the moment, the Global Fund for AIDS, Tuberculosis and Malaria (which was invited to the event but did not attend) provides treatment for 3200 Dominican PLWA. But 4,000 people died of AIDS in 2005 and it is estimated that 10,000 people need treatment access. The Global Fund program is currently not scaling up or providing access to treatment for additional PLWA in a number of provinces heavily affected by the HIV/AIDS epidemic due to delays and "bureaucratic problems" according to COPRESIDA and people living with AIDS from these regions, which include Hato Mayor, San Pedro de Marcoris, Higuey, Nagua, and numerous bateyes throughout the country.
PLWA angrily called on COPRESIDA to open long promised treatment centers outside of the Capital in various small cities and rural communities, where PLWA still have no access to medical services for AIDS and often lack resources to travel to Santo Domingo or other distant centers where medicines and better care are available.
They also denounced "mandatory" AIDS testing in the tourism sector. Two PLWA and former tourism sector employees described how they were immediately fired when their tests were positive. Several described how blood samples are collected from Hotel employees, under the guise of testing for Hepatitis or other diseases and then AIDS tests are conducted without the consent of the employee. The Dominican tourist sector is one of the islands most important industries and it serves hundreds of thousands of visitors from the US as well as many European countries flocking to Dominican beaches and luxury hotels. There are no requirements for HIV testing for hotel guests, who pay an average of $200 a night for their rooms in expansive all inclusive resorts run by multinational hotel companies and investors.
Oher PLWA mentioned that Dominican universities now require HIV testing as part of the admission procedure.
Expanded health care coverage under new Social Security Reforms: Except for PLWA
Even more ominous is the fact that the Dominican Government is now organizing a public/private health care partnership to provide medical services to the entire population, and has passed a law authorizing the organization of this program. However, the law provides two exclusions: 1) People Living with HIV/AIDS who would not be covered, and 2) People who are physically handicapped. In other countries around the region, PLWA have successfully fought during the past ten years to receive benefits (including ARV access) provided by national health care programs, while the Dominican government is apparently moving in the other direction, trying to exclude PLWA from receiving treatment in the new social security system.
Agua Buena staff and Dominican PLWA called on COPRESIDA, (which functions as the rector Agency for AIDS related issues in the country), to organize actions against the law and to assume a pro-active role in denouncing other human rights abuses. Agua Buena also questioned the apparently passive role of UNAIDS and PAHO staff in the DR in defending the rights of PLWA against such patently evident human rights abuses. "COPRESIDA should be helping us, but they earn high salaries, and don't help us at all," said one Dominican PLWA.
One COPRESIDA staff member left conference, after angrily telling the group that Agua Buena staff were not Dominicans and should not come into the country to "meddle in our affairs."
Medication pricing for rescue therapy in the Dominican Republic was discussed in the conference and denounced by Eugene Schiff of Agua Buena: "Second line medications such as Reyataz (atazanavir), Kaletra (lopinavir/ritonovir), Viracept (Nelfinivar), Fuzeon (T-20) remain unavailable or cost 10-20 times the price of first line generic medicines, which greatly affects the sustainability of treatment access in the future. Government authorities seem to prefer to thank donors such as the Clinton Foundation for their support, rather than think about the future and publicly address and pressure for price reductions of newer ARV medicines," said Schiff.
Just a few days before the conference, Bristol Mayers Squibb held a gala event to announce the availability of Reyetaz in the country, at a price of over $400 per month. Many first line cocktails in the Dominican Republic now cost less than $40 per month, for all three ARV's combined.
Schiff also pointed out that "Global Fund indicators are confusing and artificially constructed. They don't correspond to country needs, or the need for reaching universal access to treatment for all who need these lifesaving medications in 2006. The government reports to UNGASS claims that nearly all the indicators have been met, while basically ignoring that 4,000 people are dying of AIDS each year, and medicines or interventions are not reaching tens of thousands of those who need them most."
After the Global Fund: What Happens Next?
Most PLWA present were very quick to point out that there is no guaranteed sustainability of treatment after an eventual termination of the Global Fund project, since the Dominican Government does not assign any budget of its own resources for purchasing ARV medicines. Richard Stern of Agua Buena called for COPRESIDA and PAHO to demand that the government allocate funds immediately to cover the treatment needs of those people not covered by the Global Fund project.
Laura Porras of Agua Buena pointed out that the channeling of complaints of human rights violations is artificially impeded by absurd requirements such as detailed written letters signed by marginalized PLWA who would have to provide their names and risk further consequences. Many PLWA present acknowledged that they were aware of abuses against illiterate PLWA who could not even send such letters, let alone deal with potential consequences. It was suggested by most participants that COPRESIDA should be more pro-active in going into the field and investigating problems, even based on verbal reports of abuses, rather than sitting in the offices, and waiting for file folders to arrive. COPRESIDA staff present did not address this issue.
The Conference highlighted the problem of poor coordination between HIV/AIDS and TB programs. Very few treatment sites have been able to integrate services and improve care for TB/HIV co-infection. TB health care workers often remain untrained or unwilling to address the special needs of TB patients with HIV co-infection. Guidelines of related to provision of isoniazid preventative profalaxis to people with HIV/AIDS remain unclear and poorly implemented.
Some participants pointed out that the Global Fund has also divided the PLWA community, because of rivalry about allocation of funding for NGO sectors, and that COPRESIDA has been very agile in attempting to promise funds to groups of PLWA who will not cause problems for the government.
Penny Wise but Not Pound Foolish
The two day event, featuring nearly eighty participants was held in the INFAS Conference Center on the Malecon (Costal Highway), in Santo Domingo, cost a total of $3,700. This included three nights lodging for 30 PLWA who came from outside Santo Domingo, as well as three meals for out of town participants, two coffee breaks per day for all participants, and access to a large Conference Room. This figure also included transportation costs by bus for the participants from out of town, and a small per diem ($10 per person) to assist local PLWA in their daily transportation costs from their homes to the Conference Venue. The air conditioned meeting room in which the Conference was held was right on the grounds of the hotel, had a good sound system, and easily accommodated the average daily attendance of 75 people. "I think that many conference meetings and workshops could be arranged in very adequate, but less expensive venues," said Agua Buena Director Stern. "There is an enormous amount of resources being spent on these activities, by the Global Fund, PAHO and many other Agencies, and there is no reason that these events have to always be in four star hotels. When the resources run out, many will wish that not so much money had been squandered on overpriced facilities, meals and luxury hotels."
*Agua Buena Human Rights Association
San Jose, Costa Rica